Lucky Me.

I sat on the beach today.  Lucky me. The sun, the sand, the waves.  Just as I visualized it when I would lay in my hospital bed the past few months.....so grateful.

Gratitude

As I sit in my living room I am overcome with gratitude,  I am so grateful for my body responding to weeks of antibiotics, the wonderful staff at UT medical center for kindly facilitating all they do to get me on my feet again.  I owe my life to the dedication of my doctors, nurses, cna's and respiratory therapists;  it takes a big team and I am blessed to have access to modern medical care.

Tonight my breathing is labored and I am tethered to an O2 tank.  I feel this disease taking more then I want to give but tonight I will live out of gratitude that I am in my home; it's warm and dry as the cold rain falls outside.  I am fortunate.  I am blessed.  I am loved.

Merry Christmas!

Tomorrow I get to leave the hospital.  I have spent 28 days on the 9th floor of UT hospital.  My body has been pumped full of antibiotics.  Vancomycin, cipro, zosyn, zyvox and colistin  have been delivered through the line in my groin then moved to  the the line in my chest. I am thankful to be going home for Christmas.

Darkness

I am tired.  Tonight is the end of a long week.  Last Saturday evening I started with a low grade fever.  Like kudzu attaching on and lurking up a tree it started slowly, once it starts there is no stopping it,the plague of the South clamps onto the innocent sampling creating a topiary that transforms;  The morphed image is a giant statue of kudzu,a tribute to it's need to consume. And so it went with my temperature, enough to notice on Sunday at 99.9, enough to get my attention but allow me to continue, wondering how high it will climb.  By Monday I am feeling the tentacles of sickness wrap around me, again.  I am familiar with the clamp on my chest that starts tightening as the vice grip of fever climbs.  I start giving up all intention of accomplishing tasks, there will be no unpacking, no tending to the details of settling back in. Life is reduced to breathing and toileting, zombied out in the blur of illness.  By Tuesday the reduced life is taxing, with temps near 103 and fluid quickly filling my chest the choice is breathe or walk, both can not compete with the effort of the other.  Two steps, stop, gasp, pull the oxygen line along.  Low level anxiety buzzes through me.

I have to see the Doctor or go to the ER.  The ominous mantra plays over in my head, "avoid the ER at all cost.  You don't want to get exposed."  One encounter with the wrong bug ruins my chances for a future lung transplant.  I can't risk getting better today and forfeit my hope for tomorrow.   I have to maintain vigilance at all time in all situations.  I can't get exposed to Hepatitis or Cepacia or a hand full of other rare and common bugs.

My doctor sees me, by now I'm using the wheelchair.  My heart is racing trying to compensate for drowning lungs, my 102.9 fever pounds my head.  The x-ray version of my lungs look mike marbled Swiss cheese.  The swab from my nose points to influenza type A.  Miracle medicine, tamaflu is given to me with the assurance that I will feel better, but not today, not tomorrow either.  These things take time.  Follow up with my pulmonologist and go to the ER if I get worse but I just want to go home.  I call my two kindred Spirits and ask them to pray for me.  They go to battle as I am defeated.

I want to go home, to the place where I will not have to be sick anymore; to the place of sunshine and warmth and all manner of perfection.  I want to go home where kudzu does not grow and peace reigns.  I want to flee the present with all the trials and pain this world offers.  I am exhausted from pulling myself up, trying to stay triumphant in the weeks and months that had recently passed.  In the past 6 weeks I had been at various hospitals for 35 days, never home long enough to settle or recharge. The looming thought of transplant lies ahead like a deadly obstacle course.  I will have to be sicker, much sicker, to get the chance of breathing easy.  It will get worse before it gets better. I cannot stand for it to get worse.  I am at my limit.  I continue to pray for the fever to break.

But the fever, like the kudzu triumphs, I am transformed from an adult of dignity to a blubbering dependent child of pain.  The next few days are a blur of fever bursting through walls of sweat, moments hugging the garbage bin emptying my stomach of what is not there yet my body continues to puke and purge itself clean.  I keep asking the all knowing One why?  Silence rings as deafness; my question mocked as the fever morphs my reality to the present.  In the moment only pain exist, another hurl, another wave of nausea continue.  I beg for relief from the maker of all good things.  I am lost in darkness.  I have asked what I vowed I would no longer ask. WHY?  Knowledge is futile in the face of pain.  My body will recover, I hope the same for my faith.

Where Am I?

I was once young, now I am old.  I use a wheel chair and a walker,  I shuffle.  I am in pain or I am high, having not yet discovered the happy medium.  I am struggling to accept.   Surely this is just a rough spot on the journey not a new normal.  I am lost.

Falling Down

  Sunday was a glorious fall day.  It's mid October and the leaves are just beginning to change from  lively green to passionate  purples, red, goldss and orange hues of autum.  The tempature climbed to a perfect 73 degree and nature cried out to be celebrated.  What better way to enjoy being outside then with a picnic.  So I head over to my local sub shop to grab some sandwiches and on the way out to my car my plans change suddenly.  Stepping off the curb with three wonderful hoagies in hand I fall down.  My leg collapsed, ham and cheese goes flying through the air, roast beef rolls under the car and I am left sitting on my rump.  I begin to nervously laugh at what must have been a sight to behold.  The commentary begins in my head- " here she comes folks, she's almost there and there she goes folks, she's down."  Feeling flabbergasted I proceed to try to get up and realize I have no control over my right leg.  I can feel it, but it's not responding to my command of pushing me up.  By this time I have gathered a little crowd.  My 14 year old son is watching me, trying to help but having no clue what to do.  An older British man is trying to pull me up but I'm stuck between my car and the truck in the next space.  I'm fluctuating between laughing at the absurdity of the situation and crying because I'm feeling out of control.  After several failed attempts at rising I decide the path of least resistance is to crawl to my car. Once I get there I have to pull myself up by arms and pull my legs inside.  They feel like jello.  My son gathers the spoils while the Brit suggest I take care of my self and wishes me well.  (Gosh, I love that accent).  While I have no upper leg control I do have enough strength in my foot to move from the gas to the brakes so I contemplate my next move.

     Given the option of going to the emergency room or going on a picnic it's very clear to me what is more important.  So we head to the park.  The kids sit on a blanket next to the car and I sit in the car not wanting another rendition of free falling.  The subs are delicious, the sky so blue with the sun so golden, all is perfect. I embrace that moment, bottle it up to draw from the well of happy memories to help balance the bad days I sense will lie ahead for I am aware that I can't feel my lower extremities.

     Once my stomach is full (NOTE- never go the hospital on an empty stomach, just the thought of hospital food makes a papa john's sub tastes like caviar) I head over to the emergency room.  The nurses come out to transfer me to a wheel chair as I cannot move my legs at all by now.  Within an hour the CT scan shows no stroke or blood clots.  I am admitted to the hospital for physical therapy eval and an MRI.  It is now three days later, I was transferred by ambulance to Erlanger hospital in Chattanooga.  I have an IV in my right foot and I am scheduled to have a lumbar laminectomy.  At this moment the surgeon and the anesthesiologist are debating the pros and cons of general anesthesia verses local anesthesia.  They both seem passionate on their positions.  I feel like a pawn waiting to see which way I will be moved.  These doctors are new to me; I have not had the opportunity to tell them that I need a team approach to my medical care and I am the captain.  I will need to understand all possible plays with a risks and benefits analysis before the game begins.  Knowledge is power so I google strange medical terms and evaluate what I can control and what I can not control, one moment at a time.

Good days and challenges

Lately I have been having a hard time feeling settled......at peace......content with my world.

I am well relatively speaking.  I have not been in the hospital since the end of March.  I have traveled on vacation.  I have planted flowers.  I have watched my daughter graduate from high school.  I have watched my Mother have surgery.  I have gone through the normal ups and downs of every day life.

When I am stuck in the hospital there is a rhythm that I long for, I have referred to as the minutia of the mundane and it goes like this:   We are hungry, we prepare food, eat, do the dishes and the cycle starts all over again within hours. The house is clean, we live, the house is dirty, we clean, we live, the house is dirty, we clean.....on and on, ad nauseam.  Laundry....don't get me started.

I'm thankful for the steadiness of life, thankful that I'm not actively sick right now but feel....bored?....discontent?  I want more.  Boredom from being stable is a luxury I have not been afforded very often, it feels strange like after being out at sea for years I am not sure how to walk straight on my land legs.  It's a wonderful problem to have.

A New Challenge

I went to Duke transplant center for a check up this week.  First time I had been there since July of last year.  I'm supposed to go every 3-6 months but kept postponing appointments for various reasons.  My lungs seem stable despite the need for oxygen.  They would like to see my again in 3 months and they are concerned about a new condition I have developed:  I am fat.

I would not qualify for a transplant today due to the fact that I am overweight.  There seems to be a great correlation between successful transplant and healthy body mass index.  So the challenge is to lose 20 pounds in the next 3 months.

Food is my drug of choice.  I like the taste, textures and distraction of food.  I eat for pleasure and to avoid pain.  A cold pepsi perks me up, a big mac brings me a feeling of being satisfied for a fleeting moment.  This has not been a problem until now.

I have justified my eating habits by blaming steroids; Nothing like some prednisone  to create a bottom less pit in your stomach.  I have also blamed the antibiotics I am constantly taking, they leave a horrible taste in my mouth that must be covered by continuous consumption of sweets.  I am a stress eater and respond to life being out of control by controlling what I can, namely what goes into my body.  I love food.

So now the struggle for discipline begins.  I know I can do it, part of me really wants to.  Yet there is another part of me that is tired- tired of struggling, tired of the continuous challenge of doing the "right" thing, tired of trying.  I wonder which part of me will direct my future.

Winter is over.

Sometimes I cannot write about my hospital experiences as I go through them.  Writing is a way to connect with my emotions and express myself.  Sometimes I choose not to embrace what I'm feeling. Sometimes it is better for me to keep my feelings at bay so I do not write.

I came home from the hospital today.  I have spent 54 days at UT medical center this year, beginning January 21.  I was released twice only to return again. The dates are a blur to me. The first time I came home was after 3 weeks of antibiotics.  I responded well and felt better then when I was admitted but still not great.  Soon after being home  I started running a fever, I returned to UT two days later.  A few more weeks of antibiotics and I was released to come home on Saturday, March 8th.

 I remember the date because it was important to me to be home for my son's 14th birthday which was on the 10th.  Unfortunately I was home for less then 24 hours.  I had a fever through out the night  and my family tells me I was  restless in my sleep, holding random conversations that were full of angst and irritation.

 I awoke the next morning feeling hopeless and full of despair.  Morbid thoughts plagued my mind.  I felt defeated;  all my coping mechanisms were gone. I was anxious beyond anything I have ever felt before.  The fight for my well being had become more mental then physical.  I was admitted to the  ICU to desensitize (again) to the antibiotics my body needed.  I was also given some anti-anxiety medicine that helped calm me but I still felt miserable.

 From my vantage point now I can tell you that I was having a reaction to a combination of very strong drugs that had been given to me.  I was not loosing my mind. After two nights in ICU I was moved back to the ninth floor; back to familiar faces that I trust to care for me.  Once again they have nursed me back to life.  (Pun intended.)  I thank God for good medical care.

So now on this third day of spring I celebrate coming home.  Winter is over, a new season has begun.